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Why Am I Having Shortness Of Breath And Difficulty In Swallowing After Being Diagnosed With Dermatomyositis?
Question: Hi, I am a 40 yr old female diagnosed this past May with Dermatomyositis, ana J01, and slight ILD. I started having brief episodes of shortness of breath/difficulty pulling in enough air. The relief comes only with relaxing, and usually within about 10 minutes. These are coming more frequently. Within the last 2 months I have had increased difficulty swallowing, which is now starting to progress fairly quickly. Nearly every night, as I lay down to try to fall asleep the process starts.....I have the distinct feeling of mucus starting to drain down the back of my throat, but it wont come down. So, begrudgingly, I try to pull it down with pressure from my tongue on the roof of my mouth - ending with the disgusting unplugging sound. Sometimes a small amt of clear mucus may come, often nothing- - - the consistent part is the gagging and few seconds of being unable to get any air. This repeats for hours. The length of time before I finally get some rest and the intensity of the gagging is getting worse every night. Would this be Globus Sensation if sometimes there really is post nasal drip? Any ideas on what to ask for proper diagnosis? And ideas for relief until then? All ideas and help is greatly appreciated!
Brief Answer:
Consult Rheumatologist+Dermatologist+chest doc
Detailed Answer:
Hi there,
Thanks for your query.
Firstly, in 35-50% cases, Dermatomyositis is associated with other disorders of immune system, such as, rheumatoid arthritis, scleroderma (which involves lungs and esophagus among other organs) or Lupus; or, a combination of all these conditions.
Also, there is associated esophageal weakness/abnormality in Dermatomyositis.
Hence, feeling of collection of mucus/secretions in the throat (causing choking/gagging sensation) is apparently due to collection and stagnation of ingested fluids which collect in the food pipe (due to weakness and abnormal movements of food pipe), but flow back into the throat while in lying/semi-reclining position.
Other contributory causes of your symptoms are GERD or scleroderma. Your symptoms of mucus/secretions in mouth, mimic post-nasal drip, which is possible if you have sinus problem.
Breathing problem is primarily due a combined effect of ILD and possible Scleroderma.
I presume that you are on oral steroids, which is the treatment of choice for Dermatomysitis. INCREASE in the dose of oral steroids should ease your breathing symptoms.
60-90% of GERD cases are due to H.pylori (a bacteria) infection of stomach / duodenum. A 2-3 weeks' course of a combination of anti-H.pylori therapy + a prokinetic drug, such as, metoclopramide or domperidone; followed by, 3-6 months of PPIs, (such as, Lansoprazole or Rabeprazole) + Probiotics should give almost 90% relief from GERD with consequent reduction of secretions' collection in the mouth.
You will need a thorough workup for presence (if any) of other disorders of immune system as mentioned above.
Therefore, you need to consult a Rheumatologist, Dermatologist and Gastroenterologist. Apprise him of my opinion. I am certain that they will agree with my opinion; order required tests, and- based on the reports- will arrive at a definite conclusion(s) and prescribe suitable treatment.
Hope I have addressed to your concerns to your complete satisfaction and you find my response helpful and informative. I will be happy to answer further queries, if any.
Fond regards and have a nice day,
Col (Dr.) Rakesh Karanwal
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Col. Karanwal, Thank you so much for your thorough and speedy reply. Acknowledging the title, thank you for all you do/have done for the country - and taking time to field my question. I appreciate your guidance and will gratefully share this as I request the additional testing. I will be contacting my Rheumatologist to request an appointment when the office opens in a few hours. He just performed some h. pylori breath tests around the 20th Dec, hoping those results are in. As I agree this does sound likely. Also, in the last few hours, whatever the sinus thing is seems to be coming more evident - as does the perceived 'lump' in my throat - it is sore when swallowing (approx. 4 of 10 pain scale) though not externally palpable - and unable to tell if it is the back of my tongue swollen or part of my throat. * * * * I must apologize for leaving out the medication information. Your presumption would be most accurate based on most cases. For mine, I don't recall at the moment why...but I'm not on steroid treatment. (could possibly have been related to the type of lung involvement, not sure). I am on an antiviral plaquenil and an immunosuppressant cellcept. I've had to take a break from the immunosuppressant for the last week to clear up the latest "what the heck is this" roller coaster of tinea cruris - fully tested and treated via acute care center over holidays. * * * * Your thorough response in spite on the limited information leaves only a couple of tiny questions in my mind. 1) Any ideas on gagging/throat relief in the mean time - home remedy to ease discomfort a bit?/something I can do to try to manage severity? and 2) In addition to discussing this with the Rheumatologist, Do you see a need for me urgently seek an ENT appt as well for any potential throat issue or wait for Rheumatology direction on all symptoms? (asking due to the swallowing and gagging getting fairly severe last night). 3) Similar question for seeking Gastroenterology appt urgently or waiting on Rheumatology direction first? * * * * With 8 months of research under my belt, I'm getting better at knowing who does what, and who to contact when something new happens. Again, I'm so thankful for your time and effort in the detailed and helpful reply you've already provided. I'm genuinely looking for your experienced opinion..."what would you have a family member do?" type advice, please do not hesitate to give this direction and quantify as such if you or HealthCare would prefer. Any further direction would also be appreciated as the information is empowering while moving toward feeling my best. Warm regards and deep appreciation, XXXXXXX
Brief Answer:
First Priority : Consultation with Rheumatologist
Detailed Answer:
Hi XXXXXXX
Firstly, I deeply appreciate your kind words for me. Thank you very much.
1. Irrespective of the outcome of H.pylori breath test report, it would be worthwhile to start a Prokinetic drug, such as metoclopramide or domperidon.
2. The presence of a 'lump' feeling is apparently due to inflammation (soreness) and scarring of the lower part of the throat and upper food pipe. Soreness is caused by the friction by the food, as well as, reflux of stomach acid. Warm gargles should give some relief. Alternatively, anesthetic sprays are available (Lidocaine, Lignocaine, Xylocaine) OTC. Use of spray into the throat 5 minutes prior to eating, would abolish soreness/pain while swallowing.
3. There are no effective remedies for preventing gagging. However, small frequent meals; eat slowly, take small bites and chew well before swallowing; sleep in semi-recumbent posture with head-end raised at 30-40 degrees; sleep on your sides or preferably on stomach so as to prevent aspiration of throat contents into the lungs.
4. It would be worthwhile to give a trial of Nitrates (such as, isosorbide dinitrate- used for angina, but it also relaxes the food pipe sphincters and thereby facilitating passage of food from the throat into the food-pipe.) and Calcium channel blockers (such as, nifedipine or verapamil- which too act similarly as nitrates). If all measures fail, then relaxing the upper sphincter (valve) of the food pipe by surgical procedure would be required. My personal experience with use of these drugs in similar cases as yours, is quite encouraging.
5. As mentioned earlier, food-pipe problem is PART of the immunity disorder(s). You are already on Cellcept- an immunosuppressant, which- by suppressing immunity- should give relief. So, consultation with Rheumatologist should be your TOP PRIORITY. It would however, be a wise decision if you seek appointment of an ENT doctor, as well as, a gastroenterologist, on dates immediately following Rheumatologist's appointment.
6. Last, but not the least, I am in full agreement with your treating doctor's course of action. However, I am of the opinion that- in view of persistence of your breathing problems despite Cellcept- your doctor should actively consider addition of steroids (such as oral Prednisone) in high doses initially, which may be tapered off gradually to minimally required dose, depending on the response.
7. Lastly, I am highly impressed by your firm determination, courage and a positive outlook. Do keep up your high spirits, reconcile with the medical setbacks, brave it out and enjoy life to its fullest. Do not lose hope. It would be wonderful if you join a Community Support Group.
Fond regards and best wishes,
Dr. (Col) Rakesh Karanwal
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you once again, Dr XXXXXXX your guidance is once again beyond possible expectations and deeply appreciated. The additional details in your response are helpful, both interim home type remedies and also the steps/topics for next medical appointments. While I am delighted with the care I receive directly from my Rheumatologist - he was able to diagnose me in 20 minutes after being ill 3 years and having seen 8 other specialists - - - I am pleased to have reached you and received your support as my full medical care/guidance otherwise through at least Monday is to wait for the available appointment and go to the ER if symptoms warrant. I reached my Rheumatologist's office this morning, however the nurse gave me an appointment of Tuesday with advise of going to the ER if symptoms became serious enough. He is still working through a number of staff related issues, not sure if this is one of such. I then followed up with the Pulmonary Specialist who had mentioned the possible ENT consult in my last appt. He is unreachable by his office until Monday. I will work through the home remedy suggestions, and stay as relaxed as possible through Monday/Tuesday. I have seen an ENT and GI Dr within the last several years, I will reach and request appointments following the Tues Rheum appt and continue signed releases for each Physician to share and discuss my health information as needed. I also appreciate your encouragement, we have but one life to live - and everything happens for a reason. We aren't meant to understand the overall plan. The unknowns have been the most difficult to handle - - - which combinations of what contribute to the shortest life spans - - - honestly to use the best guess approximations - if I could find them - to help me plan my time with my precious 7 year old daughter. (Should I wait to feel better - are the extreme fatigue symptoms going to get better?, or hurry up and make plans for a New York trip she dreams of?) ((Spend the $8K on dental bridge rebuild to last another 15 years, or just replace the TMJ guard for far less, and add in another trip with my family???)) Those are a bit personal for a community group - however I believe I would benefit greatly from the exposure to others and some type of commonality. I may be able to help someone else keep their spirits up or with some of the research I've done, and have more of this feel worth while : ). Thank you so much, for so much. I appreciate the guidance and your time. If you happen to have any other guiding thoughts come to mind please do not hesitate to share. Ever thankful, XXXXXXX XXXX
Brief Answer:
You will certainly improve with treatment
Detailed Answer:
Dear XXXXXXX
I wish you all the best. Keep up your high spirits; think positive- of ALL the good things God has given you in life; that you are much luckier than millions who have worse medical conditions.
You have a long way to go. Spend quality time with your family and the charming young lady.
God Bless
Dr. Rakesh Karanwal
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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